Tuesday, July 28, 2009

Camp Health Hope & Happiness

Last year for the first time ever Jake went to camp for a week. By accident one day I stumbled across the Camp HE HO HA website (here if your interested www.camphehoha.com, Jakey is actually on the website now!) and found out that it is a camp just for kids with disabilities. They have two seperate camps, one for kids with physical challenges and the other for mental. Luckily I got in soon enough and he was able to go! Krista went with him as we were nervous about having him by himself for a week and they both had a blast!

This year he went again, only he flew solo this time. Krista loved it last year but felt he would benefit and do well without her so on the 12th of July we took the drive to Seba Beach, Alberta to drop him off. We really couldn't have picked a worse time to go to camp as it was pouring with rain, but as soon as we arrived there were kids and their counsellors running all over the place and jumping in the puddles!

Needless to say jake was NOT impressed when he figured out what was going on, but I met two of the young ladies that would be involved in his care and felt confident that as soon as I walked out his cabin door, he would be having as much fun as the rest of the kids.

After 6 very peacefull days for us and 6 fun-filled action packed days for him we were anxious to see Mr Jakey again. He was so excited to see us but we could tell he had a great time. The theme for the week was Super Heroes and we even saw Superman in the flesh wandering around. Apparently Jake was quite the hit with the lady folk as we discovered on our way to the car and managed to melt a few hearts with his killer smile and sparkly eyes.

What I said in my earlier post re the Ronald Mcdonald House rings true for Camp HeHoHa. It is a fantastic place with a sweet spirit that is evident as soon as you enter the grounds. The people that take care of the kids are amazing and I am just in awe of how they choose to spend their summers. It really does give me reason to hope that this world isn't as mean and nasty as it sometimes seems.

Because it is such a specialised camp it is expensive, but most of it is subsidised by generous businesses and groups so that at the end of the day families like ours that already have alot of extraordinary costs related to having a child with a disability are able to have a break for a week for a relatively small fee. And this I am so grateful for!

Ronald McDonald House 16th-18th June 2009

In June, Jake and I got to spend some one-on-one time together. For any dental work that he needs to have done he has to have a general anaethetic. He needed a filling and some cleaning to be done. His mouth has always been a pretty sensitive area and so I am actually surprised we have gone 8 years without any problems.

His surgery was booked for the 17th June at the Stollery Children’s Hospital and because we would need to stay in the city for 2 nights we got to stay at the Ronald McDonald House in Edmonton.

We went in for his pre-op appointment on the 16th and because the weather was sooo nice and the house was only a mile or so from the hospital we were just able to walk. I have never spent any time on Whyte Ave, but heard a lot about it so it was nice to feel like a city slicker once again.

The house was just beautiful! Jesse and I had stayed at RMH in Australia when Jake was a baby but that one was much smaller and not near as fancy as this one. It only cost us $12 per night and it truly is a home away from home.

The house’s main floor had 2 play areas plus 3 kitchens and a dinning room. There was also a library and a T.V/quiet room. There were 2 upper floors that had bedrooms and a laundry plus some more T.V rooms. There is enough space in the house to accommodate 30 families. In the basement there is a sort of teenage area with a fuse ball table etc. They have a few paid staff, but most of the people there are volunteers. Once a week some Hutterite women come in to bake for the families.

For the past 8 years I must admit for probably seven and a half of them I have wished that Jake was just a regular little boy that could speak and act appropriately in public, use the bathroom, not have to be on medication and cart some clunky communication device around and certainly not have to be admitted for surgery for a simple filling! But if he was just a regular boy we never would have had the amazing experiences that we have and having the privilege to feel the sweet spirit at Ronald McDonald House was one of those times.

Wednesday, May 20, 2009

Teething Problems

I am still in the process of getting this site up and functional. Please stay posted!!!

Monday, April 13, 2009

Jacob's Story

Our first child Jacob Thomas Blackmore was born on the 15th of December 2000. Other than me having Hyperemesis Gravidarum during the first half of the pregnancy, everything was fine. It was a normal delivery 10 days early and he had a high apgar score. The first odd thing that I noticed was that he didn't cry, I mentioned this to people and they told me not to complain, I should be grateful to have such a good baby. He also wouldn't latch on for me to feed him so he was bottle fed from just a few days old. He was a very quiet and content baby, but my husband was very easy going, so it didn't ring any alarm bells. He didn't grasp or mouth anything, hated being on his tummy and didn't roll over till he was five months old.

A week later I awoke to a strange sound coming from his crib. I got out of bed to check on him and he was stiff, blue and had his eyes rolled back in his head. I screamed "he's not breathing!!" and my husband and father came to his aide, lifted his tiny body out of his crib and laid him on the floor where my dad gave our son mouth-to-mouth while my husband kneeled beside him with tears streaming down his face. My Mum called the ambulance while I slumped to the floor hysterical. Then my Dad said those two wonderful words "he's breathing". I ran downstairs and picked him up so relieved that he was O.K. We thought we had saved him from a cot death and the ordeal was over, it never occurred to any of us what difficult road lay ahead of us.

The ambulance arrived at our house and we explained what happened and they checked him over. They said they saw no reason for him to need to go into the hospital, but if we thought it would make us feel better to have a doctor look at him, then they would take us in. Jake and I went in the ambulance and my husband followed us in our car. Halfway to the hospital he had another one of those episodes. And once we arrived he had another one, and another...he had a total of 24 of these 'episodes' that day. As well as 2 lumbar punctures and a whole lot of blood tests. They tried lots of different medications to make these episodes stop, but nothing worked. Finally at around 10pm that night, 14 hours after it all started the doctors gave our tiny little boy a loading dose of Phenobarbital (an anti-epileptic medication) that stopped the seizures, but it was so much that he slept for 3 days. I was happy though, anything not to see my little boy go all stiff and blue.

The next day he had a CAT scan as the doctors suspected a brain tumor, and thankful it showed nothing. The next thing they wanted to rule out was epilepsy so he had his first EEG, which also came back normal. As strange as this sounds, that disappointed me. I was quite naive and thought that epilepsy was no big deal, to me the diagnosis of epilepsy would give what he had a name and with the right medication, things would go back to the way they were. By now (our third day in hospital) all of the tests that Jake had done were normal and he hadn't had any more seizures since the day we initially went in. The pediatrician sent us home with some medication and we again thought that was the end.

Things were good for a couple of weeks until Jake started having those same episodes again. This time we were transferred to a larger hospital where Jake had an MRI (which was normal) and a 12 hour video-monitored EEG, it was from this EEG that some seizure activity was spotted and so the diagnosis of epilepsy was made. The episodes that Jake was having were Tonic Seizures. At that point we were put in the very capable hands of our new pediatric Neurologist. He warned us and said that we were likely at the beginning of a very difficult road, that such uncontrolled epilepsy in such a young baby was very serious. I brushed his warnings off; bad things don't happen to me, my little boy is going to be just fine.

After another month of being in and out of the hospital with long seizure clusters and trying all different kinds of seizure medication we got a break. Jake started rolling and smiling again, he wasn't too far behind in his development, the way he was going I thought he could easily catch up.

Then one day he started doing these little head bobs, just out of the blue, sometimes he would just be in his high chair eating his lunch, and other times it would happen just after he woke from a nap. I knew what was happening, but I didn't want to deal with it.
Just after Jake was diagnosed with epilepsy my husband and I attended a seminar where a very experienced Epileptologist spoke. I remember her talking about Infantile Spasms and being thankful that Jake didn't have that. We were given a folder that had all the different seizure types and syndromes and characteristics of seizures, but I told myself that what he was doing was just a normal baby thing and it would go away. My husband is much more realistic and level-headed than I am so he called our Neurologist and he asked us to come in for an EEG right away. So at eight months old our little boy was diagnosed with Infantile Spasms or West Syndrome...I was devastated. The diagnosis was grim, even if they could get the spasms under control he would likely develop Lennox Gastaut Syndrome (LGS) and even without LGS, it was unlikely that his seizures would ever be controlled and he would be at least 'mildly retarded' at best.

We were living in Australia at the time and there the first line medication is Vigabitrim. He was slowly weaned onto that up to the maximum dose for his age with no improvement. In fact the seizures seemed to be getting worse. He was having 50-100 seizures a day. During this time his development completely stopped. He even stopped smiling. He just used to lay there all day with a vacant look to his eyes. I found that very difficult to deal with, and wondered if I would ever see his sparkling smile again. The second medication we tried was prednisilone, an oral form of ACTH. That stuff was horrible, he cried all day and all night while he was on that. It did decrease the amount of seizures that he was having, but the ones he was having were far more intense. Our neurologist then suggested that we try something else. He had two options...ACTH injections (steroids) or Topirimate. He gave us a run down of the side effects etc of both meds and recommended that we think about it over the weekend and call him first thing Monday with our decision. I was quite depressed at this point and seven months pregnant with our daughter Anna. My dad suggested we get away for the weekend so we could make a decision on our own and just have some much needed time to ourselves.

We decided to put Jake on Topirimate. After having Jake on the oral steroids it really frightened us to put him on ACTH, and for some reason it just felt right to do so. Thankfuly our instincts were right and in a couple of weeks the seizures stopped. He had his last spasm on Christmas Day 2001!

However he then began having Tonic-Clonic seizures. These followed the same pattern as the Tonic ones; he would have 24 hour long clusters that we would have to take him to hospital for loading doses of medication to get them under control. We added Lamictal to his medication cocktail and I am here to tell you that his seizures have been almost completely controlled since January 2002

Jake is still very delayed and still on the lamictal, however not a huge amount. He started walking when he was 2, and is a very happy and affectionate little boy. He will be seven this December, and while he doesn't talk much yet he does understand allot of what we say and he does have some approximations for words. He has some eating issues, as I mentioned earlier he didn't mouth anything till he was 18 months old, and didn't begin to chew until a year ago. He is very fussy with what he eats, but is still gaining weight.

We moved to Canada two years ago so Jake could attend the National Academy of Child Development (NACD) which works on building new pathways in the brain. It is a lot of work, but it is worth it and the improvements are obvious. We have not done it for a year due to a difficult pregnancy, so I wonder how much better he would be doing now if we hadn't of stopped. We have two children other than Jake, a little girl Anna who is five and well and truly makes up for Jakes lack of speech! She has been very good for him. She was not planned (they were born 11 months apart!), but definitely turned out to be a blessing in disguise. And we have another little boy Orrin, who is almost 2 years old.

Jacob was formerly evaluated last July for purposes of funding for his schooling etc and it was there that he was labeled ‘severly mentally handicapped’. I have to say, it didn’t really come as any surprise, but it still wasn’t nice to hear. He has had a few seizures over the last couple of years. He has had some absence and we suspect he has also had some tonic-clonic ones during the night. While his EEG’s are never ‘normal’ they are as good as can be expected and his Nuerologist believes he is actually doing really well given his unpleasant history. He told us that he has been the exception rather than the rule.

Like I said, our ending isn't perfect. I still worry if and when the day will come when he has another seizure, goodness knows I have seen enough to last me several lifetimes, but a person never gets used to seeing their child like that. I worry about the future for him, how people will treat him, how we as a family will cope. But we know that Jake was sent to us for a reason, and we wouldn't have life any other way. If nothing else it has taught me patience and a deeper love than I could have ever imagined.